Getting ready for chemo, regrowth confirmed

Dear friends,

Another week has passed since our last update, and again a week with ups and downs. On monday Bram had his 9th (and final) round of surgery before chemotherapy. This one lasted just over 5 hours and the surgeon fixed Bram’s scrotal hernia, inserted a hickman line (an IV line to be used for chemotherapy) and a gastreostomy (a feeding line straigh into his stomach via an opening in his belly). This surgery has been succesfull and Bram is slowly recovering. But all these surgeries are starting to take its toll on Bram. So much so that during this operation this week they had to stop for 30 minutes to give Bram some time to recover before the continues the procedure.

On thursday we got the news that the supsect tissue seen on the MRI scan is indeed regrowth of the tumour. We are disappointed and upset once again. The medical team currently is of the opinion that chemotherapy is the best way forward, and no surgery to be had. This is still up for discussion though and we expect a decision early in the coming week. Tomorrow Bram will have one more CT scan to confirm his brain fluids are back to normal and if they are he can be transferred to Great Ormond Street to start chemo in the middle of the week.

Yesterday we had a special day. Bram and Max had their first play together since Bram got hospitalized over a 100 days ago. A very touching and special moment for them, and for Laura and myself. Max and Bram stacked and whacked their stacking cups as you can see in the photos.

Today is a special day as well, Father’s day. And in these circumstances one I will never forget. I spend some time at home this morning with Max, and spend time with Bram in hospital later. I would have never imagined this, but enjoyed every single second today with them. My own father showed me again today why he is such a special person (so is my mum!). They came over from the Netherlands this weekend to visit and support us. So not only my kids spend some time with their dad, so did I with my dad! I can only hope that Max and Bram will be as proud of me in the future as I am proud of my dad! Pap, ik hou van je! (Dad I love you!)

The coming week hopefully concludes our time in King’s College Hospital and will see us transferred to Great Ormond Street. Bram will finally get the medical help he needs to kill the beast called cancer once and for all. Go Bram!

Thank you all!

Love,
Jeroen, Laura, Max and Bram

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